Let's hear it for neglected tropical diseases

A newly published paper reports that these diseases, which affect one in six people globally, are neglected by everybody - by the pharmaceutical industry, by mainstream global health efforts and by the media

There is a gripping story to be told about sleeping sickness, a parasitic disease spread by the tsetse fly which threatens 60 million people in 36 countries of sub-Saharan Africa. It's a powerful newspaper yarn whichever way you tell it. It says as much about the vested interests of big business as it does about suffering humanity.

Here it is. Since 1949, the only effective treatment for sleeping sickness, or trypanosomiasis, was melarsoprol - a drug that contains arsenic. Doctors hate it. So do the patients. It is caustic, it burns, causing extreme pain, and it kills up to one in 10 of those being treated.

Then a small miracle appears to happen. In the 1990s, a drug called eflornithine is found to be very effective against sleeping sickness. It is so good at pulling people out of their coma it is nicknamed the "resurrection drug". But it is way too expensive for the desperately poor people who get the disease. The drug company holding the patent stops making it because it isn't profitable - except in rich European and North American countries, where it is a useful ingredient in hair removal creams.

Fortunately, people who do care about the treatment of poor people in developing countries - the volunteer doctors of Médecins sans Frontières and the World Health Organisation - successfully campaign to get production started again.

It's a good story, and I've used it twice: once in October 2001 and again in December 2003. But I haven't written any more about sleeping sickness because, sadly, as far as I'm aware there is nothing new to say.

Indeed, a study published online by the journal PLoS Neglected Tropical Diseases takes a close look at the media coverage of diseases like sleeping sickness and finds that we journalists overlook them. It reveals that between January 2003 and June 2007, only 113 articles were published by 11 leading media outlets, including the Guardian. We came fourth, with 15 pieces, after the BBC with 20, the Financial Times, and Agence France Presse. The Economist and Daily Telegraph managed three pieces, and CNN trailed everybody with just one.

Why are we so neglectful? The authors, Mangai Balasegaram and colleagues, asked a few journalists this question (they didn't ask me) and were told that they agreed there should be more coverage, but that the stories had to be newsworthy. They also cited a drive towards the more parochial concerns of their domestic audience and competing health interests, but the prime reason was absence of any news development.

Which is where sleeping sickness and the resurrection drug come in. We know there are some appalling diseases that kill and maim poor people who deserve better in tropical countries. The three diseases the PLoS paper focuses on are sleeping sickness, Chagas (which fares very badly with only one story specifically about the disease) and leishmaniasis. But there is a limit to the number of times we can say that. We can and will, however, write a gripping tale when we hear about one - and the struggle for eflornithine is just that.

The PLoS paper rightly points out that these diseases, which affect one in six people globally, are neglected by everybody. They "are a low priority for the pharmaceutical industry, lacking safe and effective treatments; are overlooked by mainstream global health efforts, receiving little funding; and are ignored by the media, rarely making headlines."

This is a vicious circle. Newspapers reflect the news, they do not often make it. We exist to tell you what other people are doing, not what we're doing ourselves. Balasegaram and colleagues accept that it is challenging for journalists to report "on relatively unknown diseases with limited information". They rightly conclude that those who know should speak louder, and that includes UN agencies and grant-givers such as the Bill and Melinda Gates Foundation. In my own limited experience, the only people who have ever contacted me about these issues have been Médecins sans Frontières and DNDi (the public/private Drugs for Neglected Diseases Initiative that it helped set up).

So, yes - the media should do more. I think we would if anybody came to us with the germ of a good story. With so much else happening in health, we don't have time to hunt without hints. But the door is at the very least ajar.